Wednesday, April 28. 2010

There is something so incredible about watching a child transform, to go from fear to confidence, anger to pure joy.

When Aissa first came to us, she was frightened. We were tall and white and no one could talk to her, no one but Sarah-toe (the incredibly endearing way she pronounces her friend's name), and Sarah-toe couldn't be there all the time. And we imposed rules on her that made no sense, because we had no way to explain that we were moving her away from those cupboards because there were dangerous medicines inside them and we didn't want her to get hurt. And so when we picked her up and carried her away, she was being punished for something she didn't know was wrong, and she responded with fury.

She started out by having complete meltdowns every few hours at volumes high enough that those of us in A Ward were considering borrowing ear protection from the engine room. She pushed every limit we tried to set, thrashed against every single boundary, but somehow, somewhere over the course of the last two weeks, her heart has started to open to the love being poured into her from every side.

I think she sees me as something of a constant in her life these days. I'm there every day shift, sitting at the desk while she sits on a little wooden chair next to me, working away at the latest task we've assigned her. (Today she matched pre-op photos with the correct patients and brought me their charts so we could place the photos on the correct page. And then spent two hours cutting strips of paper into tiny little pieces into a garbage can. The task is really irrelevant, as long as we've given her something to do. Her other favourite jobs include doing her wound care, controlling the rate of her tube feedings, and using a syringe to draw up and inject her medications into her own feeding tube. She's seven.)

These days, instead of screaming and wailing, I look up to the sound of her little voice calling me from across the room. Alice-oh! Alice-oh! She'll want to show me her latest paper creation, want me to tape balloons to her head, want me to admire the bright pink glasses and toy stethoscope she's commandeered from a medical kit. She's at my side first thing every morning, gesturing to things she wants, eyes bright as she waits for me to come up with something fun to do.

Today, on one of her trips past my chair, she tripped and fell while carrying a wooden box full of Memory pieces. The box hit her leg right on the place where we took skin, and the pieces burst from the box and scattered all across the floor. Her reaction broke my heart; with a furtive glance of fear around the room, she crouched down, shoulders hunched to ward off the blow she thought was coming. When I reached to pick her up, she was tense, her sobs catching in her throat. I expected a meltdown any minute, and Aissa expected anger and abuse.

Neither of us got what we thought was coming. A translator ran over to clean up the pieces for us while I snuggled her into the curve of my arm and rocked her back and forth, speaking soft words of comfort I knew she couldn't understand. And Aissa just cried quietly for a few minutes before looking up at me with wonder in her un-bandaged eye. It was like she couldn't believe it was okay to fall down, that she could make a mess and not to get in trouble for it. And I think, in some way, she was surprised at herself for not getting angry when she got hurt. She's a smart kid, our little Madam, and I think she knows something's changing, knows that there's nothing to be afraid of here.

So she hopped off my lap, gathered her game, and headed over to play it with her uncle. After which she behaved like a model patient during her first dressing change, watching everything in her little mirror. I wasn't there for that part, but they say her wound looks good, that the graft is healing well.

gorgeous... I love the part about being afraid to fall down... It's an area that God is speaking to in my own life right now.... Thank you for sharing... and thank you for the pictures... sweet baby! I am so glad ya'll are able to heal her face!

We can really say we are lucky because we live peacefully, eat 3 times a day and healthy. Seeing those photos is really hurts the hearts, he's young and suffering though we may say he doesn't deserve it but there is always a reason for every thing.

welcome!

I'm Ali, wife to Phil and mama to Zoe and Ethan. We spent the past 6 years living and working with Mercy Ships on board the world's largest non-governmental hospital ship, the M/V Africa Mercy, as nurse, electrician, and ship's baby respectively. On board the ship, we worked with a team of volunteers from over thirty different countries, providing free surgical care and healthcare development, bringing hope and healing to the forgotten poor in West and Central Africa.

In March of 2014, during a routine ultrasound, we found out that our son, Ethan, has a four-in-a-million condition known as heterotaxy. He has major congenital heart defects, and had his first open heart surgery before he was a week old. Although the future for our son and our family is uncertain, we are more than ever convinced that God will be faithful to lead and guide us through this new season the same way He has in the past.(I've had a big problem with spam comments around here and literally don't have the time to sort through all of them, so comments on all entries before Ethan's story began have been turned off to keep the numbers down. I moderate all comments on new entries, so don't worry if yours doesn't show up right away. If it won't let you post, please e-mail me at alirae[at]quist[dot]ca. I love hearing from you!)

ali (that's me!)

phil

zoe rae

ethan vikash

ethan's story

Due on the Fourth of July and born on Canada Day, Ethan has given us so much to celebrate. He had his first surgery when he was six days old and amazed the doctors by being ready to go home before he reached the two week mark. Heterotaxy can affect every organ system, but so far Ethan seems to have escaped some of the common complications. While his heart has a number of complex defects, it's working well so far. His intestines actually formed correctly, and his lungs and kidneys are all functioning well. He does have at least five spleens, and it's assumed that they do not function, so his immune system is most likely compromised; he will most likely be taking daily antibiotics for his whole life.

Here are a few links that might be helpful, since the medical side of things can get pretty confusing with a heart this special. The surgeries listed for each of his heart conditions don't necessarily apply in our case, since we have to look at the big picture, not just each individual defect; we're still waiting to see how his heart grows before we decide what the next step, which will probably taking place between 3-6 months, will be.